Hi Bobber,
I'm so sorry you are facing RSD. Please know we are all pulling for you and hope you go into remission. This is a wonderful supportive group with a combination of lots of experience. We all are in different place and react differently to meds, treatment. I agree on getting a very good Dr. I have heard very good things about the Cleveland Clinic with Dr. Schwartzman and another RSD Dr. there. A good neurologist and pain management Dr. is imperative. I've had this 13 years, but I did go into remission twice. Mine came after two benign breast tumors removal. the next day swelling, stabbing pains, frozen shoulder. Sent to physical therapy and after that along with massage therapy for a year, my arm came back nearly full use-remission. Then after about a year-other shoulder froze up=more pt. massage therapy and remission. Another year or two. Was water skiing and felt nerve pull in left hand. discoloration, (circulation is affected) swelling, frozen fingers-pain, sensitive. wrong diagnosis. wrong meds, went to another Dr. in different state, had no idea all along it was rsd from original surgery. Anyway was diagnosed with RSD and got back into therapy and pt. and massage, meds , tens unit. and got partial use of hand. They delay caused crippling of left fingers. Then moved to other hand, arm, one foot, leg, other foot, leg, full body, and internal.
Please read as much as you can. on this forum, old questions, answers. Another forum that I learned so much from was www.rsdrx.com This Dr. is retired now,, but information and answers to what RSD is etc. is excellent.
A little bit on meds-neurotin and or Lyrica are anti-seizure ,meds that help with nerve pain and spasms, jerks, jolts, electric jolts. I was on it for several years and gradually went off. For me, it was the only thing that stopped the spasms, and the full body electric shocks. I no longer have those symptoms. I did gain weight as others have, but am in the process of losing it. I'm on cymbalta, which I like, it's a anti-depressant drug, but works for me with nerve pain. Antii-depressants are a common med for RSD, as they work well for nerve pain. RSD is a sympathetic nervous system disorder, The sym. n. s.
has 3 major fuctions;1. Control of vital signs, (blood pressure,pulse, and respiration), 2. Control of internal environment (temperature control and control of other function of internal environment. 3. Control of the immune system. Many of us have high blood pressure AND low blood pressure-the para sympathetic nervous system makes that go down. I monitor mine nearly dailey as I passed out from a severe drop 60/40 and hospitalized.
A lot of us have excess sweating. Some of us switch between burning up and then turning ice cold. The normal balanced person doesn't have this. I personally feel diet is extremely important. There was a post I believe Friday on anti-imflammatory diet.
RSD affects the Limbic System in your brain and that is why depression affects most of us. Short term memory loss, a grasping for word, forgetting something in the middle of a sentence is common. Insomnia another sympton
Bone loss is part of this. That is one of the tests to confirm RSD. My left hand had a lot of bone loss.
Anxiety is another symptom for many of us.
Many of us have our ways of coping with pain, Distractions thru music, comedy, movies, reading, stretching, exercise, swimming, meditation, prayer, scented candles, really anything calming, our pets, I personally like to call friends that are ill, write cards,
My neurologist is also a psychiatrist and pharmacologist and that has helped me tremendously. The losses that come with such a life altering disorder is something we don't get thru alone. As will any major loss, grief is a process and takes time to grasp and work thru. I personnally like to journal or write my feelings down in a notebook. This disorder is not easy to understand, even by our loved ones so patience with them is important. Some of us have printed out a simple explanation off the interent or an experience by someone and given it to others. The RSDSA has a list of support groups . You can give your zip code and they will give you closest group and phone contact number. We learn a lot from others who have this.
Every year the RSDSA has annual meeting that we can attend. I think it's only $10 or $20 to join and receive quarterly flyers. The annual meeting this year was in my hometown and I enjoyed it very much. They sell DVd's of the meeting. One day is for us and one day is for Drs.
You will have good days or better days than others. Cold weather fronts affect us. Most of us like heating pads. Ice is a no no. Hopefully you can get physical therapy soon and off the crutches. It's important to move our limbs, so they don't freeze up. Desensitation is very important too. I had that in therapy and also did that at home. That's putting our feet and hands, for example thru different textures. like soft cotton balls, sand, coffee grounds, rice, Stay with us and you'll get lot of support and good suggestions.
My husband and daughter son in law and others are supportive. I'm gratefull for that and what I can do. I haven't given up hope of being able to do more in the future. Swimming has been the best for me=kept me on my feet and out of wheelchair.
Take care, your friend, loretta